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CHfather

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CHfather last won the day on September 12

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  1. Was your husband calling the welding company about getting welding O2 instead of your medical O2? That could turn out to be a more affordable solution for you (cost of tanks + refills + between $45 and $65 dollars for regulator and mask (~$45 is you use a standard mask; ~$65 if you get the mask specially designed for people with CH). Since you're the first person who's been here who has both HC and CH, I have three questions that might help some other folks down the line, but I know you're busy figuring things out, so if this isn't a good time to answer them, I completely understand. (1) What's the difference between your HC attacks and your CH attacks? (2) Does oxygen help with your HC attacks? and (3) I assume it's indomethacin you're taking for the HC -- or is there something else? Quite often people report things to us that at least make it seem like they might have HC even though they have been diagnosed (or self-diagnosed) with CH, so any info that would help sift through that would be great. And we always say that HC is treatable with indomethacin, but that it can be quite hard on the digestive tract, so that's why I'm curious about what you're treating it with.
  2. I'd bet that you're right and the pediatric mask has a bag that's too small. I don't know that for a fact, and I'm not sure I completely understand the situation you are describing (I think maybe there's a typo in there that's throwing me off). Pulling away to take deep breaths is of course harming the process, since you're getting room air into your lungs that now has to be expelled. Some people remove the bag and instead attach something bigger -- an unscented turkey roasting bag, for example, or an unscented garbage bag. There's a description of a different method here that includes creating a different bag -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but unfortunately the images are not appearing, at least for me. I'm going to contact Batch and ask him what we might do about that. If your physical condition can handle it, many people start on the O2 with some strong caffeine -- a strong cup of coffee or, usually better, some kind of "energy shot" (such as 5-Hour Energy) or "energy drink" (such as RedBull). That almost always speeds abort times. If there are open holes in your mask (a circle of small holes not backed by a gasket), be sure they are blocked when you inhale, so you're not taking in room air.
  3. Great. I assume you might discuss with your wife what might be the best approach. Needless to say, a lot of doctors don't like patients doing their jobs for them, even when that's warranted.
  4. Yes, at least try to get oxygen from your GP. They have some kind of book or online reference that they are supposed to refer to when treating things they're not familiar with. One of them is called "Up to Date." You can see here that it recommends O2 first: https://www.uptodate.com/contents/cluster-headache-treatment-and-prognosis?source=search_result&search=cluster+headache&selectedTitle=2~41 Any such reference will have oxygen listed as the #1 evidence-supported abortive (along with injectable Imitrex). Do you know someone at the doc's office, a nurse or assistant or something, who you could contact before your appointment to look it up? This is a link to the core study of the effectiveness of oxygen: http://jamanetwork.com/journals/jama/fullarticle/185035 Maybe you could send it over in advance, or at least bring it with you. To be honest, some of us theorize that doctors don't prescribe oxygen in part because they don't know how to prescribe it. The prescription should read something like "Oxygen therapy for cluster headache. 15 minutes at 15-25 lpm with non-rebreather mask." Ideally, the doc would fax it to a medical oxygen supplier, but even if s/he gives it to you, you can call suppliers on your own. (The "15-25 lpm" in there is an attempt at an end run. Most doctors who do prescribe O2 will only prescribe up to 15 lpm, but 25 is better, so it's worth a try if you have any voice in what gets written.)
  5. Here are a few articles about venous conditions creating CH symptoms. Of course, these might or might not have been what is shown on your MRI. In one, it says these conditions are highly responsive to oxygen. https://link.springer.com/article/10.1007/s10194-010-0186-3 http://jnnp.bmj.com/content/76/8/1084 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854946/
  6. In my opinion, the longest ways treatment has come recently (not counting clinical trials still in progress) are high-flow oxygen with the specialized mask; the D3 regimen; and busting (and, to some extent, melatonin and "energy drinks"). Probably none of those are things your doctor was thinking of. Doesn't mean that there aren't plenty of pharma and other "medical" options that you probably haven't tried, and it's great that he knows what they are, but I'd put my energy into those other things first.
  7. Doug', in case no one has a better answer for you, you might look at the first post at this General Board, "Recommended Doctor List." It's kind of old now, but it might be helpful. Also, you might post your question at the Facebook group, "Cluster Headaches," which has a pretty broad membership group. Good for you for recognizing a bad doctor and moving on.
  8. Beautiful, beautiful, beautiful, beautiful, beautiful . . . . Thanks, Bob!
  9. Considering bringing a 5-Hour Energy on the flight with you, to take as soon as you feel a hit coming on.
  10. To avoid frustration, it might be wise for you to contact your O2 supplier to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH. When the stuff is delivered, have the delivery person set it up for you and be sure it's working. You probably will want to buy the mask made specifically for people with CH, which many people love. It's here: http://www.clusterheadaches.com/ccp8/ And if you only get regulators that go up to 15 lpm (which is typically what doctors specify), you might want to buy some higher-lpm regulators. I think you might do just fine with 15 lpm for now. If you have essentially had no attack-free periods since last fall, you are on the verge of meeting the official definition of chronic. I don't know what to tell you about that. The main thing is that there's a whole bunch of stuff that is going to make managing your CH, chronic or episodic, a whole lot better, starting with the O2. More than a few folks who are chronic have become practically painfree with the D3 regimen, and the same can be said for busting. Maybe raising your verapamil dosage will help. You really don't have to fear a lifetime of the kind of pain you have been experiencing lately; nothing close to it. And, there are very promising clinical trials underway of pharma things to treat CH.
  11. Thanks, Don! You got this without a prescription, I take it. In the past, prescriptions have been required whenever I tried to get one, except for used ones at eBay. Great news if that's not the case here.
  12. ++ to what Denny said. GET OXYGEN, start the D3 regimen, look into busting (in the numbered files in the ClusterBuster Files). Busting has saved many a life, oxygen has made CH a lot more tolerable (abort an attack in 15 minutes or often considerably less), and D3 has been a game-changer. FWIW, there are substances other than triptans that can be successfully used as abortives. Or at least one, that I know of -- octreotide. For many people, Verapamil doesn't become effective until they reach considerably higher levels than you are taking. 960mg is not uncommon. Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack (most people prefer them very cold). One of the true experts here says you need to drink at least two liters of water every day, and that when you have an attack, drinking ice water through a straw so it hits the CH side of your palate will help a lot. Energy shot + oxygen yields pretty quick aborts, and D3 lessens and slows down attacks so O2 works faster.
  13. ++ to what spiny said.
  14. I can't think of a reason not to do another bust. How did your flight go?
  15. My daughter, a smoker, was terrified at first of having O2. Now, she smokes practically right next to her tank, as she's been doing for five years. Not while using it, of course, but the rest of the time. Not recommending that practice; just agreeing with spiny that if you don't do anything completely crazy your risk is minimal.